July 5, 2012 - Fourth of July

July 3, 2012 Ellie had her heart catheterization.  She did wonderfully!!  Her heart looks great....there is a slight leak in one of the valves they repaired during surgery last year and if it never gets worse (which they don't think it will) she will never have to have anymore procedures for her heart....if it gets worse.....she may need to have another surgery years from now...they don't think this will happen.  God has something wonderful planned for this little girl. She keep marveling us all!!   Here are two pictures of her heart.  One is before and one is after...

This is Ellie's heart before they did anything on Tuesday...you can see the cross over blood - the dark smokey looking areas....

This is Ellie's heart after they coiled the PDA valve. You can see the little coil in the image. You can also see the change in the amount of cross over blood there is.

This is Ellie recovering in the hospital - she did not have to spend the night.  She went in at 6:15am and we were home by 6:00pm that night.

 

July 4, 2012 - This is Ellie's offical first 4th of July fireworks.  She was in the hospital last 4th of July recovering from heart surgery during the fireworks.  She loved the fireworks...she just watched and watched...we all hated the heat but we made the most of it and for the most part we had a blast...here are some pictures.

cooling off in the misting fan

loving those bottles of water

eating a cookie

I rasised him right!!  LOL

watching the fireworks 

Watching the fireworks 

covering her ears...lol

 HAPPY 4th 2012 Ashton family!!



June 10, 2012

Ellie is doing soo well.  We are adding speech to her interventions just to offset anything unseen yet.  She is currently waving hello and bye to everyone and she is sooo close to walking independently.  She can take at least 5 steps without holding on to anything before she falls.  She is soo darn cute...I am a little bias...lol  She is very curious about her world and how things work.  She likes to make people laugh. 

 All my gifts from God!!

 Playing in the sprinkler.

Fast asleep after a long day at the zoo.

SHE LOVES THE WATER!!!

 Sooo BIG!!

 Trying to walk on her own!!

 She is more confident walking while holding on.

Have you noticed she has a different bathing suit on in each picture playing in the water.  This girl has more bathing suits then I have ever had in my entire life...LOL (All gifts from people who love her)

She is blowing a kiss...lol

Ellie goes on July 3, 2012 back to the hospital for a heart cauterization.  This is normal procedure 1 year following surgery but it still make me a little anxious because they have to put her to sleep and insert a tube into her heart to take pictures and try to coil up her PDA valve that reopened after surgery.  Nothing major the doctors say - the worse case is if they can't coil it because her valve may be too small she may have blood pressure issues when she is older which could be controlled with medication.

I am currently 19 weeks pregnant and working for the summer at the Down Syndrome of Louisville as their kindergarten/1st grade summer program teacher.  I am learning soo much from the other parents and the children in my classroom.  Things that will help me help Ellie reach her potential.  It is unbelievable how Down Syndrome affects each person differently.  It is just like typically developing children...not one is the same.  This is a stereotype that many people think - before Ellie I was one of them.  I heard Down Syndrome and I saw 1 thing in my head...when in reality it is not a single duplicated category.  Amazing.  God is soo wonderful, he has made each and everyone of us different.  We all have special tasks we have to complete while we are on this Earth no matter our characteristics.  I can not WAIT to see where my children's paths are headed and what wonderful things they will do while on this Earth.  I can not tell you how lucky we are to have these experiences we have had the same ones I was terrified for a little over a year ago.  We are coming up on the 1 year anniversary of her surgery...what an experience that was.  On June 18, we go to have an ultrasound of the new baby.  This is the same ultrasound that discovered Ellie's heart condition when I was pregnant with her.  We are a little nervous about the results but I will finally relax once it is over.  All of our prenatal tests have come back normal up to this point but we are still a little anxious about this appointment.  I know everything will be okay...God is with us no matter the what the out come is.  The only thing that will upset me during this appointment will be if the doctors say the new baby will need a surgery...everything else will be a blessing...I do not think I could handle going through another surgery like Ellie's again...

4-19-12 Soo many updates!!

Ellie is getting soo big!  She amazes me everyday with the things she is able to do.  Her lates tricks are raising her hands above her head and you are supposed to respond with "Soooo Big!!"  Another trick she has learned is that if she lays her head on something everyone says AWWWWWWWW...it cracks her up.  She has also learned this absolutely funny face...she looks like she is mad...but she is just making the face at random times...just to get a reaction out of everyone...too funny...

She is walking while holding on to furniture and it is hard to keep her contained in a space...she is very opinionated about where she wants to be and where she doesn't.  She loves her family and she doesn't like to be alone!!  No matter how stressful your day was seeing her face make me melt!!  She is proof that God can do anything!!  I forget sometimes that she has DS...I just see her as Ellie.  Life would not be as wonderful without our sweet Ellie Mae!!  Here are some pictures...

Loving her daddy at the Zoo!!

Ellie Hiking!!

12-5-11 My First Year

Dear Mommy,

I am almost 11 months old and I have to say this has been one heck of a year!!

I remember when I first heard your voice.  I wasn't sure what I was hearing but after listening for awhile I realized you were crying.  I was unsure why you were crying until I heard your prayers to God.  You prayed for God to let me be okay, you prayed to have God heal my heart, you prayed for God not to take me home with him.  You were soo worried about me. I didn't understand why you were soo worried because I knew everything would be okay.  God has a special plan for me.  He needed me to have surgery so I could bring everyone together.  I heard you asking everyone to pray.  I heard you say there were hundreds of people praying for me.  People who didn't know you, people who didn't know me, people who cared and loved us just because.  I tried to reassure you that I would be okay by kicking you but you would just rub where I kicked and sing me a song.  You had a special song for me.  One that you said was just my song.  You would also wrap your belly in a prayer blanket.  I want you to know that I felt the warmth from that blankets love and prayers.

I was soo excited to see you and daddy when I was born.  I wanted to see the faces to match the voices I heard.  When I saw you for the first time you and daddy were crying.  I wanted to reach up and grab your face and tell you everything would be okay but my arms wouldn't move like I wanted them to and all that came out of my mouth was a cry.  That made you smile.  I wasn't sure why but I realized that you thought I wasn't going to live and when I cried you realized I was okay.  You held me soo close.  I fell asleep instantly.

I spent the next few months enveloped in your arms.  It was the safest place I could image.  You and daddy kept talking about surgery.   You talked about Down Syndrome.  I heard you praying for a miracle healing.  You had many people pray over me.  I do not know what Down Syndrome is but I knew that I was ok and what ever you were worrying about would be ok.  I knew Gods plan for me.  I needed to have the surgery to fix my heart and I knew it needed to happen to bring everyone soo close together.  I also knew that everything would be okay.  God has a plan for me.  I am going to be someone special in the lives of everyone who knows me.  I am going to show many people what it means to love and be loved.  I was sad to see you so worried about me but I wasn't scared.  I was excited for the adventure.

When it came time for surgery.  Everyone was crying; except me.  I went with my doctors and they put me to sleep and when I woke up I had everyone around me and I had tubes sticking out of me.  I am sure I looked scary but I felt much better.  My heart wasn't working as hard and I could feel the change.  I know you never left my side.  I knew I was safe.  I saw everyone who came.  I could not believe how many people love me.  This was my new beginning.  My heart birthday!   I went to sleep and awoke many times and saw you near me each time.  I am sorry I didn't let you sleep much.  I was all thrown off schedule from the medicine they had me on.







Since my surgery we have smiled a lot.  I have a team of people who make sure I am healthy and developing the way I should.  I wish you would believe that every child doesn't grow the same way.  Please do not worry.  I will crawl, walk, and talk.  Keep believing in me and supporting my development.  I am soo lucky to be with you, daddy, my bubby, and my sissy.  I love you all soo much.  Thank you for never giving up on me.  Thank you for helping me and loving me.  I am amazed everyday at the level I am blessed.

Well...Mommy, I am getting tired.  I am going to go to bed.  I am a happy baby...because you love me....I can not wait till I can tell you I love you...for now...I will say it with my smiles...love you mommy and daddy....good night sleep tight...

Love
Ellie

November 5, 2011 - Happy Halloween - Dear Ellie

I was watching Ellie sleep tonight and was thinking so many things as I was looking at her that I decided to write a letter to her, another mom on here does it all the time and I felt the need to write one to Ellie...here goes

Dear Ellie,
You are soo beautiful!!  I love you more each day.  I know there are people out who do not understand your diagnosis or what it would mean to have a beautiful son/daughter like you join their family and they are scared.  I wish we could tell them how wonderful you are.  I wish you could tell them how happy you are and how happy we are to have you with us.  I wish they could feel this love.  Your smile lightens my day, your laughter brightens my week.  I can not imagine loving you more but each day I seem to feel that I love you more then the day before.  You amaze me with your abilities and heart.  You are only 9 months old yet you have control over everyone in the house and beyond.  You have a captive audience of people dying to hear the next update, dying to know how you are doing and what new trick you have learned.  All you have to do is squawk and everyone turns to look at you.  As of right now you are sitting independently, rolling all over the floor, feeding yourself treats, playing with your toys trying your best to crawl, and demanding attention when no one is looking at you.  I just couldn't imagine life without you.  Your beautiful smile melts me.  I can not wait to see the woman you will grow into be.  You are an angel....you were sent to me to show me how blessed we truley are.  I thank the Lord for you everyday!

 Happy Halloween

Pumpkin Patch

Pumpkin Patch

Trick or Treat

Everyone's Pumpkins for this year!!  Mommy carved your

pumpkin in the shape of a cross with a heart in the middle of it

to represent how God has you (and your heart) in his hands.

We had sooo much fun this fall going to pumpkin patches, trick-or-treating and carving pumkins.  You are soo curious about everything.  You are determined to get what you want...I can not wait to see how you react to these events when you get a little bit bigger.  I love you...Little Bitty!!

Ohhh...I know it is early but I think we finally picked a name for your Down Syndrome of Lousiville Buddy walk next year...we are going to be Ellie's Angels and wear halos and wings.  I am soo excited.  So many people are going to be there to walk with you to support DSL.  It will be soo much fun!!  I love you Ellie Mae...Sweet Dreams.

Love Mommy

10-13-2011 - it will be ok

I hope this finds you in a place where you are ready to recieve what I am writting.  I am talking to parents who discover that their baby will require heart surgery and may or may not have down syndrome.  I want to tell anyone who is facing the same road we are now traveling...IT will be ok...it doesn't feel like it right now...but it will be ok...

I have the need to share the way I was feeling in September 2010 when I found out that my unborn baby was going to be born with a heart defect that will require surgery and 50% of babies born with this heart condition also had down syndrome.  I was supposed to be going to find out that my baby was a girl and then go shopping for cutsie little pink outfits and clothes.  I was unprepared for this diagnosis, something that I had not imagined would ever happen to me.  This stuff happens to other people, not me.  I spent the next few weeks crying.  Crying for myself, crying for the life of my baby, crying for her future, crying because I didn't know what this diagnosis really meant or what it really would look like, or how others would treat me and my baby, crying because there was nothing I could do to "fix" it, and fearing that I would not see my baby as beautiful.  I struggled with knowing and not knowing.  I prayed for a miracle healing.  I prayed for God to just let me have her.  I feared she would not make it through delivery and then if she did I feared she wouldn't make it through surgery.  I was ashamed of some of my thoughts and worries.  I was ashamed of some of my feelings.  I felt soo alone, even though I had a support network beyond explanation.  I felt like no one understood what I was going through.  No one really understood my dreams of the "perfect" baby were shattered.
Her delivery brought mixed feelings, excitement for the arrival of my baby girl, fear that I would finally have to face the reality of whatever happens once she was born (would she live/die, would she have down syndrome or not) and guilt for not feeling anything but joy.  I cried though the delivery...not because it hurt, but because I was scared.  Scared of facing reality.  When she was born and I held her in my arms and saw she was alive, she was moving, and breathing, and ALIVE...I held her closer and longer.  I didn't want her to go away.  I wanted her right here with me.  I wanted to protect her.  I wanted everyone to love her.  At this point we didn't know if she had down syndrome, but that was not the major concern.  What kept me up at night worrying was that soon she would have to go through a massive open heart surgery.  Someone would cut her open on purpose to fix her heart.  I struggled with this one all the way through till she was 5 months and old enough to have the surgery.  For now, I had her in my arms and I wanted to do everything I could to make sure she survived the surgery.  We added her to EVERY prayer chain you can imagine.  We started prayer chains on facebook, we added her to prayer chains on the web, and through word of mouth.  There were soo many people praying for my sweet Ellie Mae.
Jumping ahead...Ellie's surgery...brought soo many fears and MANY more tears.  My biggest fear through all of this was loosing her.  Everything else we could work through.  I couldn't handle loosing her.  I repeated OVER and OVER...please don't take her God...please let me have her...please let that be your will.  It was his will.  We spent 11 days in the hospital and she did wonderfully.  We have our beautiful baby girl and she will grow up and grow old and we will be fine.  The diagnosis is scary because you do not know what it really means, or what it looks like.  No parent wants their child to have to have a surgery, a disability, or both.  your feelings are ok, it is normal to have these feelings.  I wouldn't change anything about my beautiful baby girl.  My little Ellie is a blessing to our family  She has brought us closer together and closer to God.  I still do not know what raising her will look like, but I don't know what raising my other two children will look like either  No one is guaranteed anything.  All I know is I will love her and my other two children and do the best I can for them.  When I look at my little Ellie Mae, I do not see a baby with down syndrome, I see my perfect miracle from God.  Her smile is beyond words, her laughter is enough to break you into tears.  I never imagined loving a human being as much as we all love her.  Please know once, you get past the initial shock of everything, you will be happy beyond words.  You will have a new outlook on life and a peace beyond words.  You will be ok, your baby will be ok, God will bless you as he blessed my family...with our extra chromosome....My prayers are with you for strength and peace.

Here is a story that explains the emotions you feel...I did not write it....but I clung to it the first few weeks...

WELCOME TO HOLLAND!!!

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

October 8, 2011 - updates

Sorry it has been so long since I have blogged, but life has gotten a little crazy since school started back up.

Since the last blog...

Ellie had her 6 month re-evaluation with her interventionists.  The assessment they gave her is an assessment they give to all children, not just children with disabilities.  The normal scoring range is between 90 and 110.  Ellie scored a 89.  She is one point below the normal scoring range!!  They believe the only reason she didn't score in the normal range is because she was laid up for several weeks when she had her open heart surgery and if she would have been able to work on skills during that time she would have scored in the normal range.  I was told that the intervention that is offered now for babies with DS is more intense then it used to be and they notice a HUGE impact on the development of children with DS long term. There is no one magic pill but they say some things that can have an impact on her development are fish oil, vitamins, and florestore.  Babies with DS tend to stop producing the oily substance in their brain and the fish oil can replace that helping their brain to process quicker.  Children with DS tend to become sick more often so taking vitamins and florestore can help prevent many of these sicknesses and help her to stay on track with development instead of being laid up with an illness.  We are doing all of these things.  She is receiving developmental intervention and physical therapy as well as taking all of these supplements to help her development.  Her biggest advantage is the prayers that are with her.  There are soo many people praying and loving this little girl.  She is definitely in the hands of the father!!  Thank you Jesus for my beautiful baby's progress.

We participated in the Down Syndrome of Louisville On the Move Buddy Walk.  We weren't sure what it was all about so this year we just went as a family.  It was AMAZING to see all of the people there.  They had posters of children and adults with DS and pictures of them and their abilities.  It was very hopeful to see.  Anyway...next year we want to form a team to walk with Ellie.  They had all kinds of teams there with really cool themes and names.  Names like Susies superheros  and Patricks Patrol.  We want to come up with a cool theme and team name for Ellie for next year.  We also want to have MANY people on our team.  How awesome would it be to have all those people walking with Ellie to support a program that is going to be working with Ellie for the rest of her life.  The Louisville Metro area has approximately 500 families they serve that have DS that is not to mention the surrounding areas.  I have been told that Ellie is in the best place to grow up with DS.  She has soo many programs and opportunities for her to be independent and work, and live, and be...like everyone else.  God knew the plan to bring us to Lousiville LONG before we Ellie was even a twinkle in my eye.  Anyway...We need help coming up with a name for Ellie's team for next year. Any suggestions are welcome.

Also, recently there was an article in the paper about a little 3 year old boy named Brady.  He was born with DS and a congenital heart defect that required MULTIPLE surgeries.  He passed away during the last surgery he had.  The article went on to explain that many people see children with DS as a burden on the family and society because of their health issues and long term care issues.  However the family argued that the life of little Brady was valued by all who knew him.  In his short years he touched more people with the kind of love we only dream about.  The kind of passion that we have never seen and the drive that can not be detoured.  So many people hear DS during their pregnancy and the thought of termination crosses their mind.  I could not imagine life without Ellie.  I pray that no one ever takes the life a child due to a diagnosis of DS.  They are not a burden, they are a blessing...I cried when I read Brady's story in the paper beause his story hit home.  His final fate was what I had feared for Ellie.  That was not God's will and we are still blessed with my little miracle baby.  Her smile melts me, her laughter brings me to tears.  No matter how tired I am or grumpy I am...one look from her and everything goes away and the world is good again.  Thank you Lord for opening my eyes to what is important.  I wouldn't change one thing about Ellie...I LOVE her and her extra chomosome.  Oh...there was a cool poster up at the DS walk...it said...Friends don't count chomosomes.  AWESOME!!

August 29, 2011 - Ellie is laughing

Thank you for all of your prayers.  Sorry it has taken me soo long to post another update and pictures.  So I posted videos instead.  Ellie is doing fabulous.  She is beginning to sit up with little support by her self and she is babbling.  It melts my heart when I hear it.  She smiles when you just look at her now.  There is nooo way you could be in a bad mood when you see her smile no matter how tired you are.  I could not imagine life without her.

When we saw the cardiologist last week I found out that she will have to go to the hospital next summer to have a heart catheter put in so they can take pictures of the inside of her heart and to close up the valve that reopened.  I realize it is a minor procedure and they do not even consider it surgery but she will have to be put to sleep again and she will have to be intabated again and even though she will only have to stay one night at the hospital it still breaks my heart to think this is coming next year.  How ever it seems soo minor compared to what we went though this past summer.  Thank GOD that is over.  For anyone anticipating an upcoming surgery, I know what you are going though but I promise the hardest part is the wait for it.  Pray, pray and pray some more.  God is good all the time.

July 9, 2011 - First full day home

Thank you to everyone for your thoughts and prayers throughout this entire process.  This was one of the hardest things we have ever had to go through.  I never wish anyone to have to watch their child go through something this horrendous.  Knowing that you were all here praying and thinking about us made it just a little bit easier.  I am having trouble with posting comments on your comments and sending e-mail to you.  I appreciate everything.  You can not imagine how much you mean to us!!

Ellie is doing great and is loving being home.  Last night she got a bath and we scrubbed the sticky tape and glue off of her.  She got lotioned up (except for where the incision is) and rocked to sleep just like she used to before the hospital.  You can tell she is glad to be home.  She is still a little sore and complains a little when she is moved no matter how careful we are, however, you can tell she is doing a whole lot better and glad to be home.

My posts on here will begin to get fewer as we begin to relax and enjoy life a little more now that this surgery we have been anticipating for the last year is over.  We have been so consumed by the surgery we missed the little things.  I will still post updates from time to time and would love to keep in contact with you all.  If you would like to stay updated and do not have facebook (because I am on there all the time) please send me your e-mail address and I will be glad to talk with you.  Here is my e-mail: address
faith.ashton@jefferson.kyschools.us

Nurse Kristina I would love to stay in touch with you and have no way to message you.  Thank you for showing such compassion for my little angel.  I know you see a million children every day and yet you still treated Ellie like she was special.

July 1, 2011 3 days after surgery

Ellie is still doing great. We are staying another night in the ICU. Ellie is having a hard time with pain. They try to take her off the pain drip and she starts getting rally fussy. They have her on morphine now and she finally seems to be having pain relief. They said this is common with children with down syndrome because they for some reason require more sedation when they are needing to be sedated and more pain medications to control pain. They want to watch her one more day. She looks BEAUTIFUL!!!!! I am soo amazed. The dr told me that she is doing better then most children who go through the exact same things. God is good...all the time...he put this song of praise in this heart of mine...god is good....ALL the time!!!